Fatigue
Sometimes I feel guilty for complaining when some are so much worse off than me however this is my story. I used to work full time as a nurse and on my days off I could garden from morning to night and only stop because it was too dark to see anymore. Gardening is my passion and my way to recharge. Now I can maybe garden for 2 hours at the most and when I’m done I am so short of breath I can’t even speak till I rest for at least 15 minutes. Since I don’t hear many here speak of shortness of breath I thought maybe it was a heart issue so I requested an echo which was fine. I thought maybe it was deconditioning but I try to do as much as I can every day and it doesn’t get better. I used to fall asleep driving home from work so I was finally put on nuvigil which helps and I am no longer working. I never feel like I have any energy. When my neurologist asks me if the nuvigil is working this is what I can tell her. I still never feel like I have energy but if I would happen to forget to take my nuvigil I am utterly useless to the point where I just need to lay down. That is when I realize that I forgot my pill and why I feel like this. So yes I guess it’s working because without it you might as well just bury me. I don't mean to sound morbid or depressed cause I’m really not but I don’t know how I would even function without that pill which is really expensive and insurance won’t cover because “It’s not for MS fatigue” It’s really annoying when someone says “You just need to get more sleep” because it doesn’t matter how much I sleep, that doesn’t improve it. I feel guilty because I can only do 1/8th of what I used to so my husband picks up all the slack, and if I overdo it too much I will pay for it with no energy the next day. That’s a small piece of my story. Thanks for listening.
- It can be disheartening when you aren't able to do even half of what you may have done before. I appreciate that you've shared your story and believe that many people can relate. I can.
It's hard when sleep doesn't seem to be the magic solution to everything. But I'm glad that you can tell Nuvigil helps. If you haven't looked into it, you may be able to save some money by using GoodRx.com. You can receive a coupon for a prescription. I've used it before when the cost ended up being less than my cost going through insurance. It's worth looking into.
I'm curious (with winter moving in where I live). Do you garden inside the house? Or have a collection of house plants that thrive with little attention? Sometimes bringing the outside indoors can be a nice way to continue enjoying similar things.
Thank you for sharing, Lisa, unfortunately I do not do well with house plants, lol but thanks for the suggestion. I will have to check into the good rx price for the nuvigil.
thank you for sharing! I'm still not diagnosed, working through the medical system. But I have noticed that the muscles in my torso are constantly in a state of contracture and the spasticity affects my posture and the ability to catch my breath. If I stay at the same task for more than half an hour without changing for a few minutes, I can't catch my breath. I have a hard time speaking while standing because of what my muscles are doing.
So I feel you. I hear you. And I can relate.
Please give yourself grace, don't feel guilty. It's not something within your control that your symptoms are causing your actions to be less than they were. Forgive your body and nervous system, and give yourself some love. You have earned it.
Sending you my positive thoughts 💜Thanks, appreciate the support
I was a nurse too a DON. Now I can work one day week doing stuff they kinda made for me. I get it I do anything & im down for day or 2. If I have like more than 2 things scheduled in a week I’ll have cancel if have anymore & the 2 things can’t be two days in row. Not being able to work makes me feel worthless. I really feel like I’m a waste. I havr nightmares that work too slow at job & am way behind or unable to do job & wake up sweating thru my clothes.
, I want to jump in and write things like, "you're not a waste!" and "you're so much more than your job!" and I do think those things. But, I know you probably posted here just to get those thoughts out and the last thing you need is some well meaning person coming in with platitudes.
Your feelings are valid. Your worries are valid. And I am glad you felt like you could share them here. You are definitely not alone in how you are feeling.
Best, Erin, Team Member., I know, hang in there. I was diagnosed in 2008. At the time I was working in float pool at a teaching hospital floating to med- surg, tele and ICU. When I came back to work we were transitioning to computerized charting. It was too much. I had to take more time off. The next thing I did when I came back was drop ICU. I was intelligent enough to make decisions but I couldn’t process the information fast enough in a crisis and stress would just make my mind go blank. I did well for awhile but as they took away nursing assistants and secretaries and added those duties to our job I couldn’t keep up with the pace and had to leave the bedside and started reviewing physician documentation. I loved it but my 2 hours of commuting to the hospital and back wore me down. Eventually I was allowed to work remotely which was great. Then they started to tighten up on the metrics and I couldn’t process the information fast enough. During that time I also took care of my dad who was dying of parkinsons. Eventually I ended up taking early retirement and that was the end of my career. It was hard at first because so much if my identity was in being a nurse and like you I lost my sense of worth but I have now adjusted and enjoy time with my family and my granddaughter and trying to pick up some hobbies I didn’t have time for before. Give yourself grace and try not to listen to any coworkers who try to make you feel less of a nurse. You are not. You are amazing to still be working, but remember being a nurse is not all of who you are. There are many other things that make you You. I have those nightmares too, It’s afternoon and I haven’t given my morning meds etc. I think almost every nurse does. Part PTSD from more and more workload being piled on us. It still sucks, not being able to do even half of what you used to and I know exactly how you feel. Glad we have this forum to commiserate with each other. Hugs!
